2004 - May 2006
to lack of space on the Message Board Forum, some of the older messages
have been archived here:
Messages prior to September 2004
2004 - May 2005
2006 - December 2006
2004 - May 2006
2006 - November 2006
2007 - February 2007
2007 - April 2007
for the inconvenience.
39, USA. Oct 30, 04 - 2:09 AM
was actually diagnosed about ten years ago. However I stopped going
to an opthamologist and started going to an optomitrist. The optomitrist
had never heard of this. Anyway, I am currently wearing contactt lenses
and was wondering if you know if this is a good idea or not. I plan
on going back to the opthamologist for somee follow up.
UK. Nov 1st, 2004 - 8:15 PM
question - I wear contact lenses and asked my consultant if this
was a problem and he said not. I was prescribed eye drops and asked
if that would affect contacts - again he said not. Strangely when
I read the paperwork with the drops one of the contra indications
is wearing contacts! If anyone knows the answer I'd like to know!
48, UK. Nov 12th, 2004 - 8:55 PM
wear contacts most days. I was told to put them in 15 mins after
drops. Does anyone else get watery eyes? the past few days I sometimes
look as if I'm crying
S, 34, USA. May 29th, 2005 - 4:16 AM
lenses can be worn by someone diagnosed with Krukenber spindle or
Pigment Dispersion Syndrome (PDS). Being told you have PDS does
NOT mean you have glaucoma OR mean you need any kind of treatment.
PDS MAY lead to glaucoma, but not always. Anyway, wearing contacts
doesn't affect PDS. If you have been Rx'd drops for your condition,
wait at least fifteen minutes after the drop before putting your
lenses in. PS I'm surprised the optometrist had never heard of PDS/Krukenberg
Spindle. I'm an optometrist and it's a basic sign we routinely check
for (easily seen in the microscope)
eye tests in the UK
32, UK. Aug 8, 05 - 3:04 PM
everyone I found out that I was entitled to a free eye test on this
site because of a risk of glocoma. I mentioned this to my optician,
who checked with the NHS trust. They stated that I could only have
a free eye test if the consultant had written and confirmed that I
could have a free test. Is this correct?
40, UK. Aug 8th, 2005 - 3:16 PM
Emma, It was the optician that told me I was entitled to free eye
tests because of the glaucoma risk, but when I tried to get the
tests on a six-monthly basis, he told me that the free NHS entitlement
(on grounds of glaucoma risk) covers ONE free test a year, unless
otherwise stipulated by the hospital consultant. I have 2 hospital
appointments a year, as well as the free test at the opticians,
so I haven't asked the consultant to contact the optician for more
tests - I feel eyeballed enough! Glad you found the site - keep
32, UK. Aug 8th, 2005 - 3:53 PM
Tracy Thanks for that. My optician doesn't think I am entitled
to one test a year unless there is written confirmation! I may
go back to them on this. Also you mentioned you have two hospital
appointments a year. Presumably this is for tests. What tests
do they do? The consultant I have seen simply sent me away and
told me to get my eye pressure checked once a year by the optican,
and only come back to him if my eye pressure goes up. Should I
have any further tests? I am just abit worried as with PDS it
is obviously important to monitor the eyes. I only see my optician,
no one else, should I be under the care of anyone else at this
time? Any info would be brilliant
40, UK. Aug 8th, 2005 - 4:34 PM
Emma The tests done at the hospital are the basic chart test,
then the visual field test, where you have one eye covered and
hold a clicker - you look at a light in the centre of the screen
and every time you see a flash of light on the edge of your
vision (without actually looking directly at it), you click
- then the consultant inserts drops in my eyes and examines
them to see if there's any change in the pressure, or blocking
of the drainage channels. Occasionally, drops to enlarge the
pupil are put into the eyes, so that the consultant can get
a better view... it's advisable to have a pair of very good
sunglasses after having these drops! Your pupils will stay enlarged
for a few hours afterwards, so you'll be advised not to drive.
Does anyone know of any other tests that are done?
44, UK. Sep 26th, 2005 - 11:05 AM
that I'm suggesting being dishonest or anything ...... but I know
that if you are over 40 and you have had a parent with Glaucoma
(or say you have.. they don't ask for proof) then they automatically
give you the NHS Eye Test for free at an opticians.
eye surgery with PDS
30, N.Ireland. Jun 14, 05 - 5:51 PM
I was just about to get lasek eye surgery done when the doctor notice
that I may have PDS, and said I would need to go to an eye specialist
and get tested before he could do the procedure. He said even if I
have PDS I could still go through with the surgery as it would have
no affect on this condition. Is this true? Thanks Brian
Coleman, 35, USA. Oct 5th, 2005 - 2:45 AM
just saw a research papers on the effects of lasik on PDS eyes.
Something like 20 eyes of 11 patients were studied. Lasik outcome
was as good as expected 26 months after the procedure, and there
were no changes in PDS, no atypical increases in IOC. The only note
was that one patient classified as having pigmentary glaucoma was
slower to heal and had "vision fluctuations" during healing. This
patient did heal, and had improved vision after lasik. Other studies
have also shown good lasik results, with no apparent worsening of
PDS or increase in gloucoma risk - HOWEVER, the studies have not
been longer than a couple of years duration. Although worsening
of PDS or increase in IOC longer than 2 years after Lasik that is
due to the Lasik surgery itself seems unlikely, they may be possible.
For now, opthalmologists don't seem as concerned about it as they
used to be.
high is too high?
48, USA. Jul 10, 05 - 4:33 AM
just been diagnosed with PDS. Does anyone know at what number of pressure
it becomes medically necessary to start treatment? My pressures range
between 29 - 30. However, my cornea's are thin so they have to add
two points to it making my numbers 31 & 32. The doctor prescribed
Travatan eye drops. Has anyone ever used them? What about the side
effects? Any input is greatly appreciated.
Farebrother, 34, England. Oct 16th, 2005 - 7:22 PM
my name is Natalie and im 31 years old i was diagnosed with pds
about 9 months ago after going for a routine eye examination .since
then i have been going to the local eye hospital and my pressures
have risen from 19 to 26 in my left eye and 23 in my right eye.5
days ago they put me on timoloi eye drops and im to take these for
2 months to see what happens! i have read about people with higher
pressure than me and still not been put on eye drops so i think
it must depend on your doctor.good luck hope this helps.
with Krukenberg's Spindle
54, Canada. Jan 26, 06 - 5:54 PM
was diagnosed with KS over 5 years ago & although my Dr wanted me
to have annual check-up's I did not take his advice until this week.
I made an appointment to see him after I had my eyes tested for new
glasses. My failure to heed his advise has shown a marked difference
for the worse in the condition of my right eye. Field tests & laser
appointment has been set up for mid February to determine the extent
of the change & required treatment. For those of you who have been
diagnosed with this condition, please ensure you have the annual check-up's
as recommended by your Dr. Personal History: KS in right eye. White
female borm in UK 1951, move to Canada in 1971. No history of KS in
family. Have 2 brothers & 6 sisters & 2 children male (35) & female
(33). Both children have been tested & do not have KS. I will keep
you posted on the results of my upcoming tests.
40, UK. Jan 26th, 2006 - 6:08 PM
advice, Daphne. Good luck in February!
43, Wales. Feb 6, 06 - 10:02 PM
site has already helped so much. I had a routine sight test in March
2005 which showed little change in my vision over the last two years.
However in the last two weeks I've been waking with pain in my eyes
particularly the left one and pain occasionally in both eyes through
the day. I had seen an advertising campaign for the RNIB and so made
an appointment to seen my optician today. I am so glad I did as she
diagnosed krukenberg spindle and referred me to my GP to see a Specialist.
I'm glad to read so many positive reports on the web site as it seems
this is a condition that can be lived with and managed but am still
real worried as I have so many people depending on me. Can I carry
on driving ? kind regards
40, UK. Feb 6th, 2006 - 10:23 PM
Helen, Sorry to hear that you've been diagnosed with KS. It should
be ok to carry on driving, but don't overdo things, try not to drive
at night, and don't do any strenuous exercising. Also, try wearing
sunglasses whilst driving during the day (unless it's too dark to
warrent them). The specialist will be able to tell you whether you'll
have to use eye drops and/or have laser treatment. Try to rest your
eyes as much as possible - cut down on looking at a tv or computer
screen for long lengths of time (sunglasses can help here, too).
As you said, it's frightening when first told, but it is very definately
something that is bearable, and to a certain extent, treatable.
Good luck when you see the specialist, let us know how you get on.
Best wishes, Tracy
to stop using eye drops during pregnancy
40, UK. Dec 4, 05 - 6:39 PM
found out that I'm 6 weeks pregnant. The doctor at the hospital has
told me to stop taking the Latanoprost eye drops until I have finished
breastfeeding. As the eye drops have been a god-send, I'm a little
worried my IOP's will shoot up now that I'm no longer taking them.
Has anyone else had to stop taking them because of pregnancy, and
did your pressures increase?
40, UK. Apr 4th, 2006 - 1:04 PM
an eye exam last week (30th March) and my IOP's were 15 in my left
eye and 14 in the right (the one I had laser treatment on). Quite
a relief! Am now into the 25th week of pregnancy, and baby is doing
diagnosed - my experience so far
40, Taiwan. Apr 4, 06 - 5:22 PM
American, so visiting a doctor has never been a routine thing for
me due to the high expense of anything medical-related in the USA.
The last time I had an exam, 3 years ago, everything was normal. I
never experienced any eye problems other than floaters, which the
doctors assured me was normal. I'm nearsighted, by the way. One of
my passions is hiking. I've always hated "bouncy", high-impact sports
like jogging or aerobics, preferring biking and hiking. I do like
tennis, though. Here's my experience. I now live in Taiwan. In August
of 2005 I went hiking on what was supposed to be a four-hour hike,
and we ended up lost in the woods. We started becoming concerned about
it getting dark, so we hurried along the path at an accelerated pace.
Finally we made it to civilization, after about seven hours. But I
suddenly noticed something strange: I began seeing a strange pinkish
image in the center of my field of vision, shaped like a star or a
spider or a crab when I looked at the featureless sky. I was also
seeing a kaleidoscope of phosphenes. When I stopped to rest, the image
disappeared. I decided to be careful - if this ever happened again,
I would schedule a visit to the doctor (still thinking like an American
- avoid doctor's visits only if something doesn't go away in time).
For the next two months, nothing happened. Still went hiking weekly.
But then there was another extended hike, poorly timed, in which we
had to practically run back due to darkening skies. This time I noticed
the same problem. But now, by the time we got back to the car, the
star image (in both eyes) had changed into bright, shining yellow
ovals, and I could only see out of my peripheral vision. I knew I
had to see the doctor as soon as possible. When I visited the doctor,
the puff test showed I had an IOP of 35 in each eye. An exam of my
retinas and a field-of-vision test showed no damage so far. He said
I might have to take eyedrops for the rest of my life to avoid glaucoma.
This was 3 days before my birthday. Happy 40th! I was lucky to have
this discovered in time. The doctor prescribed Timoptol, which a month
later we found had lowered my IOP significantly, but not enough. Another
exam, this time with a microscope lens placed directly on my eye,
revealed I had PDS, a condition almost never seen in Taiwan, as it
almost exclusively happens among white people. The doctor said I had
almost no pigment left, and it was blocking my trabecular meshwork.
He prescribed Trusopt, and later, Travatan, and told me about the
option of surgery to open up a new drainage channel if the drugs didn't
work. The combination of these drugs brought my IOP back to normal.
But the Timoptol and Trusopt cause me to have headaches, which I counter
with ibuprofen. After starting to use Travatan six weeks ago, I've
been seeing halos around bright lights at night and car headlights
(particularly those **** blue halogen lights) can be annoying at night.
Fortunatley, Taiwan has a national health plan and my doctor's visits
are amazingly cheap - consulting, exam and prescription total between
US$8-14 each time. I will visit again at the end of April for a followup.
I am concerned about moving back to the US eventually... This is how
it is so far. I'm considering seeking another ophthalmologist for
a second opinion, especially when it comes to the option of surgery.
I haven't told my wife yet, because I wanted to get all the facts
before causing her worry. Computer screens? Computers are my life.
I am a translator and computer programmer. I only work with flat-screen
monitors, which are so much better for your eyes. I also insist on
using incandescent lights sinve fluorescents have bothered me all
55, Canada. Apr 4, 06 - 6:39 PM
for your info .... I was wondering why I am suddenly "at risk" for
glaucoma, when there is NO family history. I also have a VERY pronounced
sensitivity to sunlight, so much so, that I have to walk around with
my eyes half-closed. I was informed that this is also "normal" when
one is afflicted. I make it a point to ALWAYS wear my shades whenever
I'm outdoors on sunny days, although recently some low-life stole
my RX glasses w/clips attached!!! Those of you who have the same problem,
or even if not, should always wear shades in sunlight as well, I was
told by my optometrist to do so without fail.I'll keep reading posts
& hopefully will see more responses re: sunlight issue. Thank You
= Red Eyes?
28, South Africa. May 3, 06 - 12:51 PM
works fantastically in reducing my IOPs, bringing them down to between
12 - 14. However, I have a strong allergic reaction to the drops,
with my eyes getting progressively redder during the day. By evening
time they are very red. Other Xalatan users, is this your experience
with the drops? If so, do you accept that, or do you use other drops
to minimise the redness? I think the drops do a great job in dropping
the IOP, but cosmetically, the red eyes affect my self-confidence
quite a lot, and my doc has put me on Cosopt, a Timolol-Dorzolamide
combo drop. Greg
40, England. May 3rd, 2006 - 3:57 PM
Greg Sorry to hear about the reaction Xalatan causes on your eyes.
Whilst I was taking Xalatan I found that occasionally they would
feel scratchy and turn red when I put the drops in (this would mostly
happen when I was tired or had been over using my eyes). But I took
the drops just before I went to bed, and by morning they'd be ok
again. Do you take the drops at bedtime, or first thing in the morning?
I agree with you, they worked a treat on the IOPs! Good luck with
the Cosopt drops. Best wishes, Tracy
28, South Africa. May 4th, 2006 - 7:29 AM
for the speedy reply. And thanks for this website/message board.
It's good to know I share this challenge with others. I was using
the Xalatan last thing before bedtime, and found my eyes to be
scratchy most of the day. I'd love to get back to teaching, as
opposed to my current job, where I'm in front of the PC eight
hours/day. I think that has a lot to do with my eyes being tired.
Any recommendations for relaxing and soothing tired eyes? Greg
40, England. May 5th, 2006 - 1:19 AM
could try wearing sunglasses while using the comp, and try to
get a filter on the screen if you haven't already. See if you
can adjust the brightness of the screen, also, and take frequent
breaks if poss. Medication-wise, I can't suggest anything...
perhaps someone else can give Greg some suggestions? Best wishes,